Disability Pride Month; Celebrations, stories and reflections
4 minute read
To raise awareness and celebrate #DisabilityPrideMonth, we’ve been sharing a selection of stories, insights and experiences from members of our team.
This term ‘disability’ coupled with ‘pride’, is sometimes seen as oxymoronic by able-bodied people [sic] and that alone makes me even prouder to call myself disabled and proud.
We’ve been sharing stories for Disability Pride Month. These have come from our team members, who have experience of disability, chronic illness, and other challenges that set them apart from a person without a disability.
- Elizabeth shared her journey from noticing the first signs to a diagnosis of essential tremor. She expanded on the challenges this presents her within her daily life and work. And she shared some of the ways she overcomes them – practical changes, like using a spoon rather than a fork sometimes, using a mouse over a touchpad and holding a mug with both hands.
- Sharon shared her experience of recovering from a stroke at the age of 41, highlighting the wide range of short and long-term effects a stroke can bring.
Tracy shared her experience of the time and effort to get answers and useful learning resources for her children. Tracy’s story of supporting her children with learning and revision gives personal insight to the realities of living with neurodiversity. She shared her delight at finding well-designed digital resources, and her frustration that neurodiverse children aren’t involved in the design process of key learning resources. Her challenges highlight the poor experience that comes from designing for, not with, specific users.
Do you know what? Their brains work fine. Better than fine. It just needs someone with empathy, understanding, time and a bit of imagination to help and pull it all together for them… really trying to find out what would work best for [them] to get them the outcomes they need...
- Lisa wrote about growing up with dyslexia, the lasting effect that poorly chosen language can have, and why plain, accessible language is always the best approach for users.
- Molly shared her experiences of being excluded from school trips and friendship groups and the discrimination and challenges she faced in education and employment. Molly talked about how these experiences eventually led her to pursuing a career in accessibility, with a goal of improving the end-user experience for all, and particularly those with disabilities.
Life has taken me on some twists and turns. I planned to be a primary school teacher, but because university failed me, I found myself instead falling into my niche…. I’m proud of the person I have become through my life experiences having a disability.
What disability means to individuals
Elizabeth shared a medical diagnosis that doesn’t meet criteria for disability. Molly shared her experience of diagnosis, disability, and being registered deafblind. Tracy shared her experience of the time and effort to get answers and useful learning resources for her children.
A medical professional provides a medical diagnosis (though not for everyone, if symptoms are unexplained), and does not define whether an individual has a disability or not.
For example, Molly has Usher Syndrome – a medical diagnosis. Her disability is separate and distinct. A disability results from the effects of a diagnosis and has a definition in law. A medical diagnosis is not defined by law. A medical diagnosis doesn't automatically mean that you have a disability, but it may mean that you need support. And lots of people don't want to disclose that they have a medical diagnosis in order to get support. And they shouldn't have to.
What's the legal definition of disability?
Legal definitions are there to protect people with disabilities from discrimination – from being treated differently because of something connected to a disability. These definitions should protect Molly from the kind of discrimination she faced in education and her early career. A legal definition is the closest we can get to the one meaning of what disability is.
Legal definitions of disability vary from country to country.
In the UK –
- Disability is one of the protected characteristics defined in the Equality Act 2010.
- You are deemed to have a disability under this act if you have a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities. For example, if it takes much longer than it usually would to complete a daily task like getting dressed, and that’s been happening for 12 months or more.
Legislation is helpful. For example, in the UK:
- The Equality Act 2010 does not mean it is unlawful to treat someone with a disability more favourably than someone without a disability. It is always lawful to treat someone with a disability more favourably than a non-disabled person.
- Employers and organisations have a responsibility to make sure that people with disabilities can access jobs, education and services as easily as people without disabilities – this is known as ‘making reasonable adjustments’.
- The link between disability and terminal illness does not exist. There are plenty of examples of this at Not Dead Yet UK.
So, if people with disabilities have all this protection, what is Disability Pride Month for?
Early 1990s. Activists in the UK campaign for the civil rights of disabled people and to end discrimination
Disability Pride Month marks the 1990 enactment of the Americans with Disabilities Act (ADA). This is the landmark US rights law that extended civil rights protections to people with disabilities. ADA also assured that all Americans would benefit from their talents. The first version of similar legislation in the UK was passed in 1995 after an 18-year campaign by creative, committed activists (more on that in Disability History Month, later in the year).
Disability Pride Month is for something more. It’s about more than a piece of legislation. It’s about a huge cultural and mindset shift, for all of us:
To change the way people think about and define ‘disability’; To break down and end the internalised shame among people with Disabilities; To promote the belief in society that Disability is a natural and beautiful part of human diversity in which people living with disabilities can take pride
There is still work to be done.
We know more now than ever about:
- Physical disabilities
- Sensory impairments
- Processing disorders
- Cognitive difficulties
- Learning disabilities
- Hidden disabilities
People with disabilities make up 15% of the world’s population – more than one billion people. And yet they are still more likely to be treated differently and be more adversely affected by changes to legislation and services.
- People with disabilities are not disposable
- The effects of overturning Roe vs Wade on people with disabilities in America
- The effects of the public order bill on the right to protest in the UK
In a world where Not Dead Yet UK identifies a need to exist, being disabled and proud remains a contradiction for many people.
We believe individual disabled people’s suicidal cries for help come from a lack of proper practical, emotional and medical support needed to live dignified lives, rather than from the ‘suffering’ they experience as a result of a medical condition. Such loss of hope – which forces some to see death as their only option – is easily misinterpreted in a society that continues to see and treat disabled people as second class citizens.
There is lots to be proud of, and yet still a long way to go. There is still shame and stigma attached to the word ‘disability’. Everyone getting the proper practical, emotional and medical support they need to live the life of their choice. No longer seeing ‘pride’ as a contradiction when used alongside the word ‘disability’. Those would be changes to be proud of.
P.S. Just had to take the opportunity to share some of our favourite #DisabilityPrideMonth content, celebrating the anniversary of the passing of ADA...enjoy! ;-)
Not So Special on Instagram: “exactly one year ago we embarked on our first shoot for this magical film on the anniversary of the #ADA 💪🏽 thanks for being on the journey…”
Not So Special on Instagram: “Blow out a candle for the ADA and make a wish that 1) you will someday be as badass as @theheumannperspective and @jkclegacy 2) we will…”
Notes on language in this article:
We’re committed to talking and writing about disability in a way that is not harmful. Language is powerful. It can reinforce or undermine stigma. The words and phrases that we use can support full inclusion in society or prevent it. We support full inclusion.
We wrote these notes to:
- Be more aware of how everyday language can be harmful
- Help us to adjust our language so that we don’t perpetuate ableist ideas
- Understand our rationale for some of the language used in this article and explain it to others
In this article we use the preferred terms ‘disabled’ and ‘non-disabled’. There are a few exceptions. Here’s why.
- ‘Able-bodied’ in this article
- The preferred term is ‘non-disabled’ over ‘able-bodied,’ because ‘able-bodied’ supports ableism
- The phrase ‘able-bodied’ is in the quote from Dalyce Wilson at the top of the article. We felt it important to stick to Dalyce’s words as they used them.
- We repeated the phrase from that quote in the first-published introduction to this piece. We have since amended it: “Other challenges that set them apart from non-disabled people.”
- ‘People living with disabilities’ in this article
- This is the wording of the original 2013 mission of Chicago’s Disability Pride Parade. It remains the same today. If you would like to challenge their language, please contact the organising committee through their website.
- ‘People with disabilities’ in this article
- Disability Pride exists to challenge stigma. To make it easier for people to identify with the phrase ‘disabled people’. Yet, many people meet the legal definition for disability and don’t use the term ‘disabled people.’
- We used ‘people with disabilities’ in a sentence with a statistic. This statistic includes people who meet the legal definition of disability (WHO). They won’t all identify with the word ‘disabled’, so we chose not to use the phrase ‘disabled people’ here. This follows uk guidance on inclusive language.
Ableism supports a message that nondisabled people are better than disabled people. This message leads to behaviour and decisions that exclude disabled people from society. Ableism can be deliberate or unintentional. We use the Center for Disability Rights Guidelines and the University of Kansas Guidelines to help our writing. There is a helpful guide to ableist language at Disability in Kidlit.
We all make mistakes. We share these notes in the spirit of learning. We understand that impact is more important than intent. We are always committed to learning and doing better. If you spot something that you would like to challenge based on best practice and inclusive content creation, please let us know.